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FPWR Blog

FPWR

Recent Posts

‘He Shows Me Everyday What a True Superhero Looks Like’ Says PWS Mom

A special contribution by guest blogger Heather Osterman. Max came into the world with a bang...or more accurately, a limp body, not breathing, and blue. I went from being induced, since Max was quite cozy where he was, to a long labor, to an emergen...

Topics: Stories of Hope

New Venture Philanthropy Investment: Palobiofarma

The Foundation for Prader-Willi Research (FPWR) has provided a new venture philanthropy award, in the form of a convertible loan, to Palobiofarma S.L., a Spanish biopharmaceutical company focused on developing innovative treatments for serious diseas...

Topics: News

'She Is Tough, She Is a Fighter' Says PWS Mom Inspired by Daughter

A special blog contribution from Krysten Leighty. Krysten shared her story via our Stories of Hope Questionnaire.

Topics: Stories of Hope

Standards of Care for People with PWS [2022 Conference Video]

In this one-hour video, Dr. Diane Stafford, Pediatric Endocrinologist at Stanford University, discusses standards of care for patients with PWS across the age continuum, including medical needs, currently available medications, supplements, and behav...

Learnings from the Global PWS Community at the 2022 IPSWO Conference

In July 2022, FPWR’s Executive Director Susan Hedstrom, Director of Research Programs Theresa Strong, and Lauren Schwartz, FPWR’s leader of the Mental Health & Behavior Research Programs, attended the International Prader-Willi Syndrome Organisat...

Topics: Research

‘Most exceptional human being that I know’: Mom Inspired by Son with PWS

A special contribution by guest blogger Rebecca Krylow. Rebecca shared her story via our Stories of Hope Questionnaire. How has your child exceeded your expectations? Joey is truly the most exceptional human being that I know. He is kind; considerate...

Topics: Stories of Hope

Our First 2021 Venture Philanthropy Investment: Aardvark Therapeutics

In support of our mission to advance the development of new treatments for Prader-Willi syndrome (PWS), FPWR announces our newest venture philanthropy investment in Aardvark Therapeutics.

Topics: News

FPWR and PWSA-USA Partner for Telehealth Needs Assessment

FPWR and the Prader-Willi Syndrome Association | USA (PWSA | USA) have partnered to conduct a study to measure interest in telehealth as a way of increasing access to care from Prader-Willi syndrome specialists. In addition, the project aims to bette...

Topics: Research

We Celebrate Our Life with PWS

A special contribution by guest blogger Jennifer Lee Three little words changed our lives forever: Prader-Willi syndrome. Jhett was 23 days old. He had spent his life to this point in the NICU. We knew we were testing for PWS, and due to my research ...

Topics: Stories of Hope